European Reference Network (ERN) eUROGEN is a cross-border collaboration set up by the European Commission in 2017 aimed at tackling rare urogenital conditions, including cancers.
This report aims to assess ERN eUROGEN's operational activity with a focus on rare urogenital cancers.
Data for descriptive analyses were collected retrospectively between 2013 and 2017, and prospectively between 2018 and 2020.
Operational indicators were set by the European Commission from 2018. Additionally, in 2019/20 centres self-assessed clinical service provision and provided clinical metrics for rare cancer specialist centres as established by experts.
Results revealed that the cumulative rare urogenital cancer population increased 519.8% from 1,631 in 2013 to 10,109 in 2020. This may provide opportunities for research and creation of a large cancer registry. In total, ten centres met the clinical requirements for rare cancer specialist centres providing evidence of high-volume. Differences in data collection methods between centres limit further analyses. Other rare cancer data identified 39 panel discussions, three webinars, and eight publications.
Whilst limitations to data analysis remain, ERN eUROGEN has demonstrated excellent operational performance with promising opportunities for rare cancer research.
European journal of surgical oncology : the journal of the European Society of Surgical Oncology and the British Association of Surgical Oncology. 2021 Nov 20 [Epub ahead of print]
Sophie Ashley, Darren Shilhan, Michelle Battye, Christian Meyer, Mariangela Mancini, Benjamin Ayres, Asif Muneer, Maarten Albersen, Wout Feitz, Johan Ferdinand Langenhuijsen, Vijay Sangar
Department of Urology, The Christie NHS Foundation Trust, Manchester, UK. Electronic address: ., Radboudumc, Nijmegen, the Netherlands., University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Department of Urology, Ruhr University Bochum, Klinikum, Herford, Germany., Urological Clinic Department of Surgical Oncological and Gastroenterological Sciences, University Hospital of Padova, Padova, Italy., Department of Urology, St George's University Hospitals NHS Trust, London, UK., NIHR Biomedical Research Centre UCLH and Division of Surgery and Interventional Science UCL, London, United Kingdom., Universitair Ziekenhuis Leuven, Leuven, Belgium., Division of Pediatric Urology, Department of Urology, Radboudumc Amalia Children's Hospital, Nijmegen, the Netherlands., Department of Urology, The Christie NHS Foundation Trust, Manchester, UK.